At the top of the Archive, we give the following advice: You must see
the direct provider of each type of treatment, have each one give you their statistics and
their expectations for your outcome, then make up your mind yourself. We consider
this advice to be the "mantra" for informed AN patients. This page,
relating the experiences of one patient, is to help you understand why...

In addition, we recommend reading Louis' story.
Louis is a physician who became an AN patient, and had to learn about his options like we
all do. What he found out is that most of his colleagues were giving him wrong advice!

I have found in talking to most surgeons (neurotologists, neurosurgeons) who do AN
surgery, a lot of them are promoting their own because that is what they know, it's only
human nature. I have also found that the four neurotologists who I talked with really
don't have any knowledge whatsoever of what is involved with radiosurgery. They are not
aware of Staten Island, Johns Hopkins or anything much other than the "gamma
knife" which they consider to be ineffective unless you are "elderly or
infirm." When I questioned them for details about their knowledge of what is involved
in radiosurgery, they really couldn't give me any answers. And these were
specialists who practice AN surgery weekly!

Maybe, there are some out there who have become educated in what is occurring with
radiosurgery today, perhaps those who keep encountering patients who refuse to undergo
surgery and they are wondering what it is all about. I still cannot believe that one
eminent neurotologist, co-chair of ANA's medical advisory board, sent me some printed
materials which were supposedly detrimental to "x-ray therapy for ANs".
This term -- "x-ray therapy" -- has to be 20 years behind the times at least.
It is never used by the radiation oncologists or anyone involved in radiosurgery
today; it is like me calling a refrigerator an "ice box!

I really believe that it takes a lot of education on the part of radiosurgery to
convince the surgeons that there may be something out there that is a substitute for the
traditional method of surgery. A lot of surgeons are burying their heads in the sand and
refusing to acknowledge anything that could be a counter to their methods. One does not
find this attitude in a surgeon as far as improved and advanced methods in their own field
of surgery, i.e. improved ways of doing hysterectomy, gall bladder surgery, band aid
surgery - just to name a few. But they will automatically resist anything that comes in
the way of what they believe in even if that belief is a little invalid.

History shows thousands of examples of such things. Electricity replacing the candle,
automobiles replacing horses etc. etc. There were always those individuals who hung on
staunchly to the candle and the horse and refused to go forward. Most people resist change
with a fervor, even if that change involves better methods or easier ways. I see it daily
even with computer programs, individuals resisting upgrades and changes just because they
find it a little difficult to adjust.

I will not forget the neurosurgeon my insurance company insisted I call for information
about "radiosurgery". He appeared to be 100 years old, he did not even know
about the specific surgery involved for ANs, and he did not have one clue about what was
involved with radiosurgery, gamma knife, peacock, proton beam, stereotactic radiosurgery,
etc. His job was to talk me into staying in town and having surgery with one of the local
neurotologists. He was not one of the doctors I included in my statement above, those were
all AN specialists.

As you can see from my experience, when you are searching for options for your acoustic
neuroma, always consult the expert in each individual field. In others words, surgeons
(most of them) will not give you or cannot give you good advice about radiosurgery because
a lot of them are against it and/or appear not to know much about radiosurgery. There
probably are some surgeons out there who are objective about new treatments, but it still
a good idea to obtain most of your information from the providers of those treatments
(radiosurgery, gamma knife, proton beam etc.) instead of taking the word of a professional
who is not involved in that particular kind of treatment.